Saturday, May 30, 2009

WE'RE HOME

Finally we are "one big happy family" together again, as Brenna would say.

Bentley was very upset about her follow up appointment today. She had other things she much rather be doing.. but she had to go. I forgot my camera so I took a few not so great quality photos from my phone. Here is the one where she is letting us all know exactly what she thought about being back at the hospital.

Now here are a few photos just before her follow up. And of course wearing one of her beautiful Bentley Bows by my dear friend Noelle with Glam R Baby! Many more pictures of her wearing the others coming soon!!


Now about the appointment..

Cardiologist says Bentley is doing well. Praise God!! Everything looked as it should a week and half after surgery. She goes back at the beginning of July for her next appointment.. and and shortly after working our way up to yearly visits. Then he informed us at about the age of 15 they will start watching her pulmonary valve closely to see if it needs to be replaced. I was a little heart broken by this because the surgeon said she will probably be about 50 before another surgery... BUT I can't complain... after all it is a good thing they will be watching closely. It is routine with TOF babies... it is not a for sure thing that she will even need surgery again, just as it is not a for sure thing that she will never need surgery again. So whether it is 15 years, 30 years, 50 years, or never... I know He will be with us.


And Bentley does too!

I have so much more to post about, but I need to end this one here.. Also there will be a giveaway soon.. hopefully the beginning of the week.

I forgot to mention that Bentley is home bound for 6 weeks after surgery, so we have about 5 weeks left. Only other major intructions.. we cannot pick her up under her arms, or hold her by her arms. She is able to crawl and pull up as she wishes.. which is a huge relief because the girl started doing this in the hospital and we couldn't stop her then so I know we can't stop her now!

Thursday, May 28, 2009

APPOINTMENTS, PICTURES, & OLD POST

Our follow up appointment is today at 1:30. We will see Bentley's cardiologist and then surgeon.. please keep her in your prayers. We are praying that Bentley is recovering well and praying that the echo (heart ultrasound) show great results. If all goes well, we will be back on our way home shortly after.

So I have had a couple of emails informing me my "discharged" post is not working.. some are able to open it, just not see anything.. so I am posting it again in case you missed it.. you can read it below. What a special day it was for our family!!! I have a lot more pictures to post but my camera's battery is dead, and to be honest I haven't a clue where the charger is at. So count on one LONG post of pictures from this past couple of weeks coming soon (once we get home). As for any updates.. Bentley's raffle drawing was tonight and it was a HUGE succes. I haven't seen any pictures yet, but once I get them I will post all about it.. we wish we could have been there but we are so grateful for all of our family and friends that took time out to be there to support Bentley even when we couldn't. More on that later. So what's miss Bentley up to.. well the girl is bored.. we have did anything and everything and she just wants her home. There truly is no place like home. We have bought more toys.. and went for a walk/stroll today. She loved that. Not even a mile down the road there is a beautiful park.. it's just a small area with beautiful trees and fountains.. there was no one there so we walked around there for a bit. And it was a nice and peaceful. I will be posting these pictures when we get back home too. Ok, so I have so many pictures to post it really might take a week long of post to catch up. ha. But they are so worth it. Talked to Bryson and Brenna again tonight.. Brenna had a tball game and Bryson hung out with his friends at the game. Ahhhh, I remember those days when I was little.. they are growing so fast (tear).

I know my post are a little spacey right now.. but I promise starting tomorrow.. I will do better.

Here is the "discharged" post if you had problems viewing it.
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A lot has happened in the last two days. As you have probably read, the only thing we were waiting on was for Bentley to gain weight and keep her meds down so they could take the IV out. That was yesterday morning.. later yesterday when the doctors made their rounds.. they informed us that the fluid around Bentley's heart and lungs are GONE! Therefore, she no longer needed medicine for that. The only other medicine she was taking was a stool softner which her body resolved on it's own. And she quit taking her pain medicine on Friday.. yes, that is right.. major open heart surgery (bypass machine and all) on Wednesday and off pain medicines Friday evening. They could have continued giving this to her through IV, but she did not need it. She showed no signed of pain what so ever. As you can see in the pictures she was happy as always. So back to the update.. fluid gone means no meds. Problem one.. solved! As far as the weight gain goes.. last night at midnight she weighed more.. earlier yesterday they did say she would need to gain weight for 2 more days, but HER doctor gets the last word.. not the floor doctor. He is not concerned about the weight at this point. He thinks everything looks great and could't be better. He even said.. no reason to wait 7 days for follow up.. we will be going to her follow up this Friday. YEAHH!! Then we will head home. I know it seems like everything is moving so fast, and sometimes it does not happen this quick, but it does sometimes.. and in our case there is just no reason to be there when she is ready to go. Bentley is so ready to be out of there, she cannot get any sleep there, at all! So we are relieved to be in the hotel.. where she can rest and recover even more. And if you were wondering what ever happen with the medicine issue.. the doctors seem to believe that Bentley was making herself vomit. As soon as the medicine hit her tastebud she would gag and vomit. They did say older kids do this all the time, but little ones like Bentley do not.. so we were clueless at first. But after becoming quite creative in giving her medicine to her this is what they have concluded. We are extremely happy with the result of everything.. surgery, progress, doctors (all so amazing), nurses (some better than others), and such a great hospital. For those of you that are wondering who did the surgery.. it was Dr. Fraser at Texas Children's. I do not have enough words to thank this man. He is brilliant and God saves lives through his hands. I haven't said anything about Bentley's incision from her surgery.. you can see a little peaking out of her shirts in her pictures but you can't really see it. You are really seeing tape and medicine (to keep it clean) over the incision. I cannot believe how small it is.. I was in shock. I was really expecting it to look so bad, but it is tiny. So impressed!!!


As a lot of you know, Bentley is a very active baby.. she has been extremely bored the past few days. We finally discovered these wagons they let you pull the kids around in, we were all for it. Daddy pulled her around while mommy took pictures.. tons and tons of pictures. She loved it! The girl was turning heads.. she is wearing the cute leg warmers and bow from another heart mommy, Shannon. We love them!!!






Hope I covered the latest updates in this post. Everything is happening so fast and I am so short on sleep... I'm just not thinking clearly. So if there is anything you are wondering just ask in a comment and I'll post about it next time maybe.

We couldn't be happier right now.. well other than being with Bryson and Brenna too. But about the surgery week.. we really are in awe of everything about it. It all happened so SLOW, yet at the same time it went by so FAST! We are just so grateful with the results of everything. It was tough, extremely tough. Would never want to go through anything like this.. but it was so amazing to feel God so close to us. I mean really.. We have never been more strong. The feeling is really indescribable.. all I can say is He was with us.

I owe so much to all of you. We are so grateful for the prayers, although we are not in the clear... God has answered so many of your prayers for Bentley. All of your sweet thougts, prayers, and words of encouragement have blown us away. They have kept me going on a daily basis and I will never be able to show you how much that means to me! A couple of you have emailed me about Bentley's bracelets.. I am so sorry I have not responded. I have been reading all of my emails just taking a little longer to respond. You can still buy them.. we have many.. too many. I will email you back soon. Promise!




If you know Bentley personally, you know she DOES NOT like car rides. Therefore she does not like her carseat. Well.. when we were about to leave.. she spoted it beside her and daddy and she made a big leap for the seat. She wanted to be sitting in that car seat more than anything at that very moment. She was ready to get out of that place. Not even 5 minutes after sitting in the car seat this is what she did. Yes, fell alseep. Finally she can rest without being messed with every 4 hours.

A fabulous blog friend Kristin came to the hospital to visit us today only to find we were discharged.. I'm so sorry Kristin, I hate for you to have gone out of your way when we just left. Glad you got to see your cousin. Maybe one day.. =)

And like I said.. if I forgot to mention something.. just ask!

Bryson and Brenna, we MISS and LOVE you both so much!! Glad we got to spend a lot of time together during the week of Bentley's surgery. But now that you two are back home with Nana and Papa.. we are going to miss you both like crazy! This is by far the longest we have ever been away from you, and it's going to be hard for us. Just know we are thinking about you every minute and I know I am driving you nuts with all my phone calls.. but that's not going to stop!! Love you!!! =)

Wednesday, May 27, 2009

HOTEL

Today we have spent ALL day in the hotel.. recovering. Bentley is doing well. She no longer has a schedule.. eatting or sleeping. So this is a little tough. It is also a little difficult because we can't just let Bentley crawl around on the floor (like she wants).. well we could.. but the only place is the hotel room floor and I will pass on that one. So she is restricted to her pack and play and the bed with mama and daddy. She's not liking that a whole lot.. and our toys are getting boring. But I'm not complaining.. she is doing great health wise and we couldn't be happier. We are missing Bryson and Brenna dearly.. just two more days and hopefully we will be on our way home! I'm exhausted so I am going to get some sleep while Bentley is sleeping.. I will have more pictures tomorrow and please continue to keep the prayers coming.. please pray that her follow up appointment on Friday goes well and her echo (ultrasound) shows great results from her heart surgery. Thanks & goodnight y'all!!!

TOMORROW

If you have not read last nights post about Bentley being DISCHARGED from the hospital click here for the latest update and many pictures!! I left a little out, but I will post more on that later.

Our close friends Brittany and Justin put together one amazing raffle for Bentley's medical fund. She called this morning and ask that I post this here before it ends tomorrow. You can find all the details on her blog by clicking here.. below are small details and just a few of the amazing prizes you could win.

Starting Tuesday May 12th, Ending Thursday May 28th. A drawing will be held on Thursday May 28th @ 7:00pm at La Fiesta by friends & family.
(Need not to be present to win.)
$1 each or 6 for $5 Raffle Prizes:

* $1,000.00 area rug – donated by Brazos Valley Carpet OneOne
* Year Lawn Service – donated by Michael's Lawn Services (mow/weed eat within 30 mile radius & less than 1 acre.. basic lawn service)
* Cut – Color – Style – donated by Leslie Hancock @ The Beauty Shop
* 1 Hour Massage – donated by NuGenesis Medical Spa
* Southern Living – donated by Theresa Meyers
* Double Stranded Cross Necklace value $68.00 – donated by Brittany Mahan @
http://www.stonedup.com/
* Smirnoff Golf Bag – donated by Glazers Wholesale Distributors
* Spray Bed Liner – donated by Mike Brem & James Guyton @ Cen-Tex Custom Bed Liners
* $150 Gift Certificate for Vehicle Window Tinting – donated by Cen-Tex Tint
* $50 Gift Certificate to Bush's Chicken – donated by Brian Tindle & Jon Randall
* 1 Vehicle Window Tinting – donated by Bobby @ Pickup Outfitters
* 1 Vehicle Window Tinting – donated by Bobby @ Pickup Outfitters
* 1 Vehicle Window Tinting – donated by Bobby @ Pickup Outfitters
* 1 Vehicle Window Tinting – donated by Bobby @ Pickup Outfitters
* 1 Vehicle Window Tinting – donated by Bobby @ Pickup Outfitters
* $250 Towards Wood Fence Staining – donated by Brad Watson
* 3 Month Membership To Gym X – donated by Gym X Manager JR Pena
* 6 Seven Day Free Pass to Gym X – donate by Gym X Manager JR Pena
* Gift Certificate for a Spa Manicure – donated by La Bella Visage
* $25 Gift Certificate to Comet Cleaners – donated by Alison Brown @ 1411 N Valley Mills
* $65 Gift Certificate (eye exam) to Lone Star Family Vision – donated by Lone Star Family Vision
* One free Jump Session (10 Passes) – donated by Jumping Party in Woodway
* New Patient Exam plus X Rays $75 Value – donated by Castle Dental
* Assorted Basket of Restraunt Gift Cards to (Double Dave's Pizza - El Chico – BrazosSteakhouse – Outback) Total Value $90.00
* Redkin Hair Product Basket - donated by Design Team
* Cut & Style - donated by Erin Ondrej @ Design Team
* Cut & Style - donated by Candice Harmon @ Design Team
* 6 Bucky Covington Concert Tickets
* 1 $25 Sams Gift Card
* 1 $25 Sams Gift Card
* 10 movie passes to Starplex Movie Theater
* and MORE!

Thank you so much to all who donated to make this raffle possible and Brittany and Justin for doing so much for our family! And to all who purchase tickets to make this raffle a success! Blessings!

Tuesday, May 26, 2009

DISCHARGED


A lot has happened in the last two days. As you have probably read, the only thing we were waiting on was for Bentley to gain weight and keep her meds down so they could take the IV out. That was yesterday morning.. later yesterday when the doctors made their rounds.. they informed us that the fluid around Bentley's heart and lungs are GONE! Therefore, she no longer needed medicine for that. The only other medicine she was taking was a stool softner which her body resolved on it's own. And she quit taking her pain medicine on Friday.. yes, that is right.. major open heart surgery (bypass machine and all) on Wednesday and off pain medicines Friday evening. They could have continued giving this to her through IV, but she did not need it. She showed no signed of pain what so ever. As you can see in the pictures she was happy as always. So back to the update.. fluid gone means no meds. Problem one.. solved! As far as the weight gain goes.. last night at midnight she weighed more.. earlier yesterday they did say she would need to gain weight for 2 more days, but HER doctor gets the last word.. not the floor doctor. He is not concerned about the weight at this point. He thinks everything looks great and could't be better. He even said.. no reason to wait 7 days for follow up.. we will be going to her follow up this Friday. YEAHH!! Then we will head home. I know it seems like everything is moving so fast, and sometimes it does not happen this quick, but it does sometimes.. and in our case there is just no reason to be there when she is ready to go. Bentley is so ready to be out of there, she cannot get any sleep there, at all! So we are relieved to be in the hotel.. where she can rest and recover even more. And if you were wondering what ever happen with the medicine issue.. the doctors seem to believe that Bentley was making herself vomit. As soon as the medicine hit her tastebud she would gag and vomit. They did say older kids do this all the time, but little ones like Bentley do not.. so we were clueless at first. But after becoming quite creative in giving her medicine to her this is what they have concluded. We are extremely happy with the result of everything.. surgery, progress, doctors (all so amazing), nurses (some better than others), and such a great hospital. For those of you that are wondering who did the surgery.. it was Dr. Fraser at Texas Children's. I do not have enough words to thank this man. He is brilliant and God saves lives through his hands. I haven't said anything about Bentley's incision from her surgery.. you can see a little peaking out of her shirts in her pictures but you can't really see it. You are really seeing tape and medicine (to keep it clean) over the incision. I cannot believe how small it is.. I was in shock. I was really expecting it to look so bad, but it is tiny. So impressed!!!

As a lot of you know, Bentley is a very active baby.. she has been extremely bored the past few days. We finally discovered these wagons they let you pull the kids around in, we were all for it. Daddy pulled her around while mommy took pictures.. tons and tons of pictures. She loved it! The girl was turning heads.. she is wearing the cute leg warmers and bow from another heart mommy, Shannon. We love them!!!




Hope I covered the latest updates in this post. Everything is happening so fast and I am so short on sleep... I'm just not thinking clearly. So if there is anything you are wondering just ask in a comment and I'll post about it next time maybe.

We couldn't be happier right now.. well other than being with Bryson and Brenna too. But about the surgery week.. we really are in awe of everything about it. It all happened so SLOW, yet at the same time it went by so FAST! We are just so grateful with the results of everything. It was tough, extremely tough. Would never want to go through anything like this.. but it was so amazing to feel God so close to us. I mean really.. We have never been more strong. The feeling is really indescribable.. all I can say is He was with us.

I owe so much to all of you. We are so grateful for the prayers, although we are not in the clear... God has answered so many of your prayers for Bentley. All of your sweet thougts, prayers, and words of encouragement have blown us away. They have kept me going on a daily basis and I will never be able to show you how much that means to me! A couple of you have emailed me about Bentley's bracelets.. I am so sorry I have not responded. I have been reading all of my emails just taking a little longer to respond. You can still buy them.. we have many.. too many. I will email you back soon. Promise!




If you know Bentley personally, you know she DOES NOT like car rides. Therefore she does not like her carseat. Well.. when we were about to leave.. she spoted it beside her and daddy and she made a big leap for the seat. She wanted to be sitting in that car seat more than anything at that very moment. She was ready to get out of that place. Not even 5 minutes after sitting in the car seat this is what she did. Yes, fell alseep. Finally she can rest without being messed with every 4 hours.

A fabulous blog friend Kristin came to the hospital to visit us today only to find we were discharged.. I'm so sorry Kristin, I hate for you to have gone out of your way when we just left. Glad you got to see your cousin. Maybe one day.. =)

And like I said.. if I forgot to mention something.. just ask!

Bryson and Brenna, we MISS and LOVE you both so much!! Glad we got to spend a lot of time together during the week of Bentley's surgery. But now that you two are back home with Nana and Papa.. we are going to miss you both like crazy! This is by far the longest we have ever been away from you, and it's going to be hard for us. Just know we are thinking about you every minute and I know I am driving you nuts with all my phone calls.. but that's not going to stop!! Love you!!! =)

GUESS WHAT!!!

ALL things are possible with God!!!!!

What is Bentley doing right now? Bentley is sitting in the hotel room with her mommy and daddy!!!!! That's right, we were discharged from the hospital today! Although her heart journey is far from over.. in fact, it will never be over.. once she has completely recovered we will have regular cardiology visits yearly to make sure everything is working good. BUT the hardest part of the journey is now behind us. We will "live" in this hotel room until her follow up from the hospital and then return home.

I know I said this last night.. but tonight either I will update with all the AMAZING details about yesterday and today or I will see if Brittany has time. SOMEONE will post tonight and let you know all the updates and why we were unexpectedly discharged and GREAT news. Oh and I have some pictures that are too cute for words.. yesterday we took Bentley for a ride in a wagon around the heart floor at the hospital. She loved it, and I have the pictures to prove it. Will post them tonight and some from today.

Ryan and I sit here in AWE of how blessed we are.. and the strength that God gave us during this past week. For the past 9 months I was so scared of how I would act during this surgery and hospital visit.. but we felt Him there with us the WHOLE time and gave us the strength to be strong for Bryson, Brenna, and Bentley.

Bryson and Brenna are now back home with grandparents. They will stay with them until we return home. My heart breaks, we have never been apart from them. This is hard.. and I know it will only get worse. Bryson is even playing a baseball game as I type (tear!). But we will be home soon and I am going to give them the BIGGEST hug ever!!!

So the details will come tonight.. I just had to let everyone know we were OUT of the hospital. We now sit here and continue to recover...

Again and again, thank you all so much for the prayers and support!!!

Monday, May 25, 2009

UPDATE

It's me.. Crystal! I have a minute so I wanted to post a quick update.

BIG HUGE thanks to Brittany for helping me out with the last two post. She will be posting for me again this evening (I think). Bentley is doing absolutely AMAZING. I know that the last post is not showing up in the dashboard (for some).. so if you did not read the last post go here to catch up.. it was a GREAT update with LOTS of pictures!

What's going on now... well Bentley is still doing wonderfully. In fact, she medically IS ready to be discharged.. but since we are having a couple of problems with vomiting.. we must wait until this is under control. So in order for us to be discharged, she will have to gain weight 2 days in a row and take her medicine and keep it down. Once these are achieved we will then move to a nearby hotel until her follow up and they release her to go home (which is 7 days after we leave the hospital). PRAISE GOD for such a healthy recovery from her heart surgery!

Expect one more update tonight.. with pictures!! Oh, and today is our anniversary (7 years).. and what a wonderful seven years it has been! We are abundantly blessed! Love you babe!!!

Thank you so much for all your prayers. They ARE working!

UPDATE

It's me.. Crystal! I have a minute so I wanted to post a quick update.



BIG HUGE thanks to Brittany for helping me out with the last two. She will be posting again this evening (I think)because we have our hands full right now. Bentley is doing absolutley AMAZING. I know that the last post is not showing up in the dashboard (for some).. so if you did not read the last post go here to catch up.. it was a GREAT update!



What's going on now... well Bentley is still doing wonderfully. In fact, she medically is ready to be discharged.. but since we are having a couple of problems with keeping milk down and meds.. we must wait until this is under control. So in order for us to be discharged, she will have to gain weight 2 days in a row and take her medicine and keep it down. Once these are acheived we will them move to a nearby hotel until her follow up and they release her to go home (which is 7 days). PRAISE GOD for such a healthy recovery from her heart surgery!

Sunday, May 24, 2009

Little Munchkin...

The "B" babies!
Ok ok. Are ya'll ready for todays post? I have looked forward to posting this all day. This has been another FABULOUS day for Miss. Bentley. She has been so happy and active, she is starting to act like her normal little self again. She is fighting momma with her naps (which is normal) haha. She is just way to busy to be still and take a nap. She is ready to get up and go!! She is getting very bored with the toys she has up there, she is ready to get down crawl and pull up. All the things she cannot do right now. Poor punkin is now use to all the hospital staff. As they come in, she turns and stares them down just waiting to see what they are going to do to her next. They did figure out what has been causing the vomiting. It was caused from the oral medications. It doesn't make sense because she is able to keep down her formula and pedialyte just fine. Its when she takes the medicine it all comes right back up. We are not talking about a little spit up, its vomiting. There is one medication in particular that she HAS to have, and that is the one for the fluid building up on her heart and lungs. She hasn't been able to keep it down so yesterday they had to give it through IV...they do not want to keep her on an IV since she is doing so well they want her off to prepare her to go home. They are still working on a solution to this problem. She MUST take this medicine for the fluid!! We do NOT want them to have to drain it surgically. NO MORE INVASIVE STUFF....PLEASE! So overall mommy and daddy say it has been a really good day, so far everyday they get better news! Please keep the prayers coming. Bryson and Brenna has spent the day with their grandparents at their hotel swimming. Everyone is so anxious to get back home, and back to the normal routine. Please continue to pray for our baby angel, and her sweet family. They are definitely working. Thank you for all your support it really means a lot.
Love and Hugs,
Britt ;)
Bentley getting bored with her toys...
So PRECIOUS!!
"WHERE'S BENTLEY?!!"
PEEK A BOO HERE I AM!!!
Ok mommy I think I'm ready for that nap now..haha!

Saturday, May 23, 2009

New Day..Great Progress!


Hi everyone! This is Brittany, Crystal's best friend. Bentley has been doing tons better today. The first picture that I am posting is from yesterday, but all of the others are from today. You can tell the HUGE difference in yesterday and today. Her fever has been up and down, but as of right now it has broke. She has had problems keeping things down as of last night and this mornig which caused her to get dehydrated, so they had to put in another IV. Right now so far so good, everything is staying down. Praise God! They did get her X Rays back, and found out that there is slight fluid around her heart and her lungs. Due to this, they have increased her medicine to get this under control. Please pray for this medicine to work. There will be other actions they will have to take if it does not clear up. She has been a HAPPY girl today! Mommy says they have had a day full of smiles and ALMOST a few laughs, she has been a busy bee. Playing with anything and everything!! Papaw (Crystal's Dad) drove Bryson home this afternoon so he could play baseball with his team. Which they WON (WOO HOO) and will now be going to city tournament! Crystal and Ryan are so very proud of this boy. They NEVER miss a game I know it's killing them to not be there. Bryson and Papaw are now heading back to Houston, please pray for them a safe trip home. And Nana (Crystal's Mom) and Brenna stayed in Houston today, to spend the day with Crystal, Ryan, and Bentley. Please pray that everything only gets better. And for another wonderful happy day tomorrow.




OMG I just want to squeeze her to pieces! I love it!

Love and Hugs
Brittany ;)

HARD DAY

Only have a minute.. just wanted to give a quick update and ask for prayers. Today has been pretty rough on Bentley. She moved out of ICU (around 12:00pm)onto the regular floor.. chest tubes and IV's were removed. She then started having a lot of pain.. they had to increase her pain meds several times before it finally helped. Earlier this evening we ran into another issue... vomiting. Bentley is unable to keep anything down at the moment, she can't even take her medicine by mouth (pain medicine) so she has not had any since about 6pm. She started drinking her formula on Thursday night and has did wonderfully, but this evening vomiting started.. after several attempts with meds, formula, and pedialyte they have decided to start 3 more IV's (now 1am) possibly 1 more during the night. One of these being her pain medicine. So she has gone a very long time without keeping her pain meds in... Poor baby, she is so miserable right now, my heart aches so bad for her. It is so hard to see her this way!!!!

I didn't get ahold of Brittany early enough to post for me, so this short post is going to be it for the night. Will update tomorrow. Bentley is sleeping so I am going to get some rest.

Friday, May 22, 2009

DAY AFTER SURGERY

It's me again. Bentley is still in ICU so I am able to post.. it's late and we are exhausted so I am going to make this as quick as possible. She is still doing very well. When we went to see her the first time this morning at 6:30 the first thing her nurse said is "she is so STRONG!" All of her nurses have been amazed with how physically strong she is. She was digging her feet and head into the bed and lifting her botttom and back off the bed.. not a little, but a lot! And yes, she started doing this yesterday.. SAME day as surgery. So when we went in for the first time this moring her nurse was talking about how strong she is, and also informed us Bentley tried to wake and get up 4 times during the night. It was really too early so they would sedate her so she would go back to sleep. But today they mentioned the next time she woke up they would not sedate her.. Bentley's ventilator came out today, and about an hour after she woke up for the first time.. Ryan and I were right there and I have to say it was one of the hardest times of this whole stay. She would try to cry but her voice was horse from the tube.. so she did not sound like herself, she would grab at us, turn her head everywhere, she wanted up, she wanted to be held, and she just wanted some lovin' from mommy (or I think so at least). It broke my heart, really.. I felt so helpless just standing there leaning as close as we (mommy and daddy) could.. holding her hand, talking to her, kissing her.. but it's just not the same. It's not the same at all when you cannot hold your child. OHHH how my heart ached so bad that moment. I just wanted to hold her and make it all better. She also made me smile so big... if you have been following my blog you will know that Bentley LOVES her paci.. well.. we asked the nurse if we could give it to her because we just knew it would comfort her. She gave us the okay so we tried it out.. Bentley spit the paci out, so I just leaned over her bed and held it in my hand. Bentley (tied up arms and all) reached over and took her paci and put it straight in her mouth all by herself! I just loved it. I know this doesn't sound like much, but it is so Bentley and she loves that paci. I just felt so good know she was able to do that herself so soon.. in a way it was her telling me she is okay. I would rub her head and she finally went to sleep. Later today she woke up a second time, this is what we saw when we walked in the room...

Bentley had lifted her leg up way up there.. all by her little self. This is the second time she woke up and stayed up for a little bit. She is something else!

Over all everything has gone well today.. she even got to drink a little pedialyte tonight. She is doing so amazing.. and she even looks so amazing for the day after surgery. She is so beautiful!!! She was a little dehydrated this morning, but that was fixed quickly, this evening she started having a little fever. We were told that this is sometimes expected but they will need to watch it closely, and if it stays or goes up they will begin running test. So please keep the prayers coming.

We are so proud of her. Her strength gives us strength along with God. We could really feel Him here with us yesterday and today. We have a whole different outlook on this journey than we have ever before. God has blessed us in so many ways.. we know this.. and we see this!!


Tonight my parents took the kids to the Houston Astros Baseball Game.. a big thank you to Kristin and her family for sending tickets to our children to have something fun and exciting to do. We appreciate that more than you will ever know! They had a blast, I will post pictures on this soon. Of course you can't go to a ball game without buying some goodies.. my parents bought the kids a couple of things and Bentley got.. a pink Astros baseball with HEARTS all over it. How awesome is that. I know we will cherish this simple little baseball forever, there is so much meaning behind it!! Thank you Kristin!!

Thank you Bonny for sending us a sweet card today! We did get it, and it put a HUGE smile on our faces! That is super sweet of you!

My sisters also suprised us with a visit today.. I am so glad!! They brought Bentley the cutest little bracelet.. and me a necklace that stands for.. BELIEVE!! Perfect. Thank you, I love you both!!

Wednesday, May 20, 2009

BENTLEY'S OPEN HEART SURGERY

(click to enlarge)

So this is what we saw after Bentley's surgery.. I did crop her out, because I do not want anyone to see her this way. I will post more of Bentley as a few tubes are taken out but there are just too many right now and it's hard for us. This is everything Bentley is hooked up to plus a few more that are not seen in this pictures. All of those little pumps in the back are used.. pretty much everything you see here is attached to her.. it breaks my heart.. it is the hardest thing I have ever had to see. You never want to see your child this way.. EVER!

So let's start at the beginning. Ryan and I took Bentley to the pre-op room.. where this picture was taken. She was tired because it has just been a rough couple of days.. she was almost falling alseep in my arms.. I then handed her over to the anesthesiologist and a few nurses who took her to the OR.. I will never forget the look.. of her face as they walked away. My heart ached like never before. Ryan and I sat there a minute so we could get ourselves together and our emotions under control before Bryson and Brenna saw us. Bryson, Brenna, my parents, Ryan's parents, and our best friends.. Brittany and Justin were in Bentley's room waiting on us. So once we let it all out.. we went back to Bentley's room.. the second I walked in.. I bursted into tears again, uncontrollably.. so I hurried out before Bryson and Brenna could see. I do not want them to know the extent of the surgery.. they are really clueless as to what all is going on and I don't want to worry them we me bawling. Bryson saw, and hurried out the door to check on his mama.. he asked me why I was crying and I just explained I was tired and wanted to go home. He said, oh.. ok. And that was that.


We then went to the Heart Surgery waiting area, and there was a large family room. That is where we stayed the whole time. There were books, games, food, snacks, drinks, and cartoons. Grandma brought scrapbooking stuff, so the kids decided they wanted to make posters for Bentley. Pictures below! Now about the surgery.. we waited about 2 and half hours for the first update.. they then let us know that it took a long time to hook her up to everything and get her ready.. they have started her on the bypass machine.. and they will begin the surgery now. we went back to the family room and spent more time with everyone. About another 2 and half hours later they updated us again to let us know the surgery was just about finished. All he had left to do was close her and do an echo to make sure everything was working good. Went back to the family area, about 30 minutes later.. we talked to the surgeon himself and he gave us all the details. He patched the hole in her heart.. he found a second hole and it was smaller so he stitched it, and then he worked on her pulmunary valve.. and he SAVED it.. this means Bentley should not need the two more heart surgeries for this at about 5 and again about 20. That is one thing I was really worried about. Most TOF babies cannot have their pulmunary valve saved/repaired because they are so damaged. In this case they usually need a couple more surgeries.. at about 5 and again about 20. So PRAISE GOD the surgeon saved the pulmunary valve. Also, PRAISE GOD for finding this second hole we did not know about and fixing it. Have I ever mentioned what an amazing surgeon we decided to go with? I just love him, he was BRILLIANT and God has performed such a beautiful miracle through this man. Over all.. the surgery was a huge success! He says their could be a second surgery in the furture about maybe 50 YEARS from now.. (on the pulmunary valve).. and by then technology will be above and beyond so their could be other ways to go about this! How amazing is that! We are thrilled with the results! Now we are not in the clear yet and Bentley still has a very tough road to face.. she is still on many many meds, chest tubes, ventilator, and has IV's going in everywhere seems like. Like I said, in the first picture you can see just a little of what we have going on. It is awful to see her this way.. health wise.. Bentley is doing well.. she is doing great.. she is doing AMAZING actually. But of course you do run into a couple of things here and there.. she is a little dehydrated, so they are working on this.. also.. earlier today she woke up and started to get excited so they had to give her a little "sleepy" medicine.. Ryan and I were in there again about an hour ago and she did the same.. woke up and looked straight at us and started to get exciting but her stats starting jumping everywhere, so we both had to move out of her site so they could calm her down. It took a little longer that time but they did calm her.. Ryan and I thought we should let her rest.. I wanted nothing more for her to look at me and SMILE.. but it's not time. They are going to try removing the ventilator tomorrow. She is at 40% oxygen right now.. she was at 50% earlier today. And yes! Bentley did receive mama's blood!!

Here are a few pictures of Bryson and Brenna with their posters and in the family room. I am really glad we had them here. They will not see Bentley until she moves to a regular floor, but these two amazing children of mine helped keep me strong. I could not break down in front of them.. I just couldn't. They keep me going all day, ahh I love them so much!!! And my husband.. gotta love him. He is my rock.. I have always known this, and he just prooved it again today! I am also thankful that both sets of grandparents were here today as well as our best friends.. Thank you Brittany for also helping keep me going today, it means so much to me!! And all of you as well.. the emails and the comments.. I read them all while we waited. It helped keep me busy during those many hours of pain.. you have lifted me up and I am so grateful for that and the prayers! Please keep them coming.. Bentley has had a great surgery, now we need a great recovery as we know there could be many bumps in the road.








Although all the we are going through.. I see that I am so blessed!! GOD IS GOOD!!

Not sure if I have mentioned it.. But Bentley has absolutely amazed me today with her strength. She has did such an amazing job in surgery and out. She is a fighter.. and everyone can see it here! Oh and everyone here has been wonderful to us. We love this hospital.. and PRAISE GOD again that we have an amazing nurse! He is GREAT! He only has ONE patient and that is Bentley. Nothing like have one nurse asigned to your child and your child only. He has been great to us.

ALSO, today was a little easier to post since Bentley needed to rest, but I know I will not have time for the next few days.. so my friend Brittany will cover this for me. There will be post and there will be updates. So be sure to stay on the look out. Twitter updates too.

Tuesday, May 19, 2009

DAY BEFORE SURGERY

Finally.. a post with pictures! We had a very busy day full of test and speaking/meeting with several different people. Bentley has gone through a lot today, seems like every time we met someone they were poking her or disturbing her in one way or another. Bless her heart! But it must be done and she came through like a champ! All of the testing came out great which means Bentley is ready for her heart surgery in the morning. We were admitted in about 3 this afternoon and have just hung out here in the room every since. Did I mention that Bentley will be 9 months tomorrow? She weighed 14 pounds 6 ounces today.. 99% oxygen.. and everyone and I mean everyone that had to work with her today could not believe how someone so tiny can be so strong.. she just blew everyone away today with her strength! I am so proud of her! Here are a few pictures from today.





Bentley's surgery is scheduled for 8 in the morning. We were told they would come get her anywhere between 6:30 and 7:00am and the surgery should last about 6 hours long. This is going to be the hardest part for us for sure! Please keep the prayers coming.. for Bentley, the amazing surgeon, and the amazing medical team that will being performing the repair, icu/floor nurses, and everyone else involved.. also if you have anything left in you.. maybe a little strength for Ryan and myself. We have had a rough 9 months emotionally.. I have had quite a bit of anxiety today.. it seems so real, yet it doesn't. We're here.. we're living this.. never thought we would.. but we are. And it plain flat HURTS! But it is time, it is time for us to get past this.. and I am happy for that. I hurt more and more every day right now, but we are that much closer to having this BIG dreaded day behind us. Just please keep us all in your prayers.. as the pain I feel to see my child go through such a HUGE risky surgery is undescribable. No words can express the way will feel.

I had a super cute video of Bentley but I cannot get it to work.. I will have to add this later. Along with many more pictures.

We thank you so very much for your prayers and support...
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